BRCA1 testing in families with hereditary breast-ovarian cancer

A prospective study of patient decision making and outcomes

Caryn Lerman, Steven Narod, Kevin Schulman, Chanita Hughes, Andres Gomez-Caminero, George Bonney, Karen Gold, Bruce Trock, David Main, Jane Lynch, Cecil Fulmore, Carrie Snyder, Stephen J. Lemon, Theresa Conway, Patricia Tonin, Gilbert Lenoir, Henry T. Lynch

Research output: Contribution to journalArticle

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Abstract

Objectives. - To identify predictors of utilization of breast-ovarian cancer susceptibility (BRCA1 gene) testing and to evaluate outcomes of participation in a testing program. Design. - Prospective cohort study with baseline interview assessment of predictor variables (eg, sociodemographic factors, knowledge about hereditary cancer and genetic testing, perceptions of testing benefits, limitations, and risks). BRCA1 test results were offered after an education and counseling session in a research setting. Outcome variables (including depression, functional health status, and prophylactic surgery plans [follow-up only]) were assessed at baseline and 1-month follow- up interviews. Participants. - Adult male and female members (n=279) of families with BRCA1-linked hereditary breast-ovarian cancer (HBOC). Results. - Of subjects who completed a baseline interview (n=192), 60% requested BRCA1 test results (43% of all study subjects requested results). Requests for results were more frequent for persons with health insurance (odds ratio [OR], 3.74; 95% confidence interval [CI], 2.06-6.80); more first-degree relatives affected with breast cancer (OR, 1.59; 95% CI, 1.16-2.16); more knowledge about BRCA1 testing (OR, 1.85; 95% CI, 1.36-2.50); and indicating that test benefits are important (OR, 1.45; 95% CI, 1.13-1.86). At follow- up, noncarriers of BRCA1 mutations showed statistically significant reductions in depressive symptoms and functional impairment compared with carriers and nontested individuals. Individuals identified as mutation carriers did not exhibit increases in depression and functional impairment. Among unaffected women with no prior prophylactic surgery, 17% of carriers (2/12) intended to have mastectomies and 33% (4/12) to have oophorectomies. Conclusions. - Only a subset of HBOC family members are likely to request BRCA1 testing when available. Rates of test use may be higher in persons of a higher socioeconomic status and those with more relatives affected with breast cancer. For some high-risk individuals who receive test results in a research setting that includes counseling, there may be psychological benefits. More research is needed to assess the generalizability of these results and evaluate the long-term consequences of BRCA1 testing.

Original languageEnglish
Pages (from-to)1885-1892
Number of pages8
JournalJAMA - Journal of the American Medical Association
Volume275
Issue number24
DOIs
StatePublished - Jun 26 1996

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Ovarian Neoplasms
Decision Making
Prospective Studies
Breast Neoplasms
Odds Ratio
Confidence Intervals
Interviews
Depression
Counseling
Research
BRCA1 Gene
Mutation
Mastectomy
Genetic Testing
Ovariectomy
Health Insurance
Social Class
Health Status
Cohort Studies
Psychology

All Science Journal Classification (ASJC) codes

  • Medicine(all)

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BRCA1 testing in families with hereditary breast-ovarian cancer : A prospective study of patient decision making and outcomes. / Lerman, Caryn; Narod, Steven; Schulman, Kevin; Hughes, Chanita; Gomez-Caminero, Andres; Bonney, George; Gold, Karen; Trock, Bruce; Main, David; Lynch, Jane; Fulmore, Cecil; Snyder, Carrie; Lemon, Stephen J.; Conway, Theresa; Tonin, Patricia; Lenoir, Gilbert; Lynch, Henry T.

In: JAMA - Journal of the American Medical Association, Vol. 275, No. 24, 26.06.1996, p. 1885-1892.

Research output: Contribution to journalArticle

Lerman, C, Narod, S, Schulman, K, Hughes, C, Gomez-Caminero, A, Bonney, G, Gold, K, Trock, B, Main, D, Lynch, J, Fulmore, C, Snyder, C, Lemon, SJ, Conway, T, Tonin, P, Lenoir, G & Lynch, HT 1996, 'BRCA1 testing in families with hereditary breast-ovarian cancer: A prospective study of patient decision making and outcomes', JAMA - Journal of the American Medical Association, vol. 275, no. 24, pp. 1885-1892. https://doi.org/10.1001/jama.275.24.1885
Lerman, Caryn ; Narod, Steven ; Schulman, Kevin ; Hughes, Chanita ; Gomez-Caminero, Andres ; Bonney, George ; Gold, Karen ; Trock, Bruce ; Main, David ; Lynch, Jane ; Fulmore, Cecil ; Snyder, Carrie ; Lemon, Stephen J. ; Conway, Theresa ; Tonin, Patricia ; Lenoir, Gilbert ; Lynch, Henry T. / BRCA1 testing in families with hereditary breast-ovarian cancer : A prospective study of patient decision making and outcomes. In: JAMA - Journal of the American Medical Association. 1996 ; Vol. 275, No. 24. pp. 1885-1892.
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abstract = "Objectives. - To identify predictors of utilization of breast-ovarian cancer susceptibility (BRCA1 gene) testing and to evaluate outcomes of participation in a testing program. Design. - Prospective cohort study with baseline interview assessment of predictor variables (eg, sociodemographic factors, knowledge about hereditary cancer and genetic testing, perceptions of testing benefits, limitations, and risks). BRCA1 test results were offered after an education and counseling session in a research setting. Outcome variables (including depression, functional health status, and prophylactic surgery plans [follow-up only]) were assessed at baseline and 1-month follow- up interviews. Participants. - Adult male and female members (n=279) of families with BRCA1-linked hereditary breast-ovarian cancer (HBOC). Results. - Of subjects who completed a baseline interview (n=192), 60{\%} requested BRCA1 test results (43{\%} of all study subjects requested results). Requests for results were more frequent for persons with health insurance (odds ratio [OR], 3.74; 95{\%} confidence interval [CI], 2.06-6.80); more first-degree relatives affected with breast cancer (OR, 1.59; 95{\%} CI, 1.16-2.16); more knowledge about BRCA1 testing (OR, 1.85; 95{\%} CI, 1.36-2.50); and indicating that test benefits are important (OR, 1.45; 95{\%} CI, 1.13-1.86). At follow- up, noncarriers of BRCA1 mutations showed statistically significant reductions in depressive symptoms and functional impairment compared with carriers and nontested individuals. Individuals identified as mutation carriers did not exhibit increases in depression and functional impairment. Among unaffected women with no prior prophylactic surgery, 17{\%} of carriers (2/12) intended to have mastectomies and 33{\%} (4/12) to have oophorectomies. Conclusions. - Only a subset of HBOC family members are likely to request BRCA1 testing when available. Rates of test use may be higher in persons of a higher socioeconomic status and those with more relatives affected with breast cancer. For some high-risk individuals who receive test results in a research setting that includes counseling, there may be psychological benefits. More research is needed to assess the generalizability of these results and evaluate the long-term consequences of BRCA1 testing.",
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AU - Narod, Steven

AU - Schulman, Kevin

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AU - Gomez-Caminero, Andres

AU - Bonney, George

AU - Gold, Karen

AU - Trock, Bruce

AU - Main, David

AU - Lynch, Jane

AU - Fulmore, Cecil

AU - Snyder, Carrie

AU - Lemon, Stephen J.

AU - Conway, Theresa

AU - Tonin, Patricia

AU - Lenoir, Gilbert

AU - Lynch, Henry T.

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N2 - Objectives. - To identify predictors of utilization of breast-ovarian cancer susceptibility (BRCA1 gene) testing and to evaluate outcomes of participation in a testing program. Design. - Prospective cohort study with baseline interview assessment of predictor variables (eg, sociodemographic factors, knowledge about hereditary cancer and genetic testing, perceptions of testing benefits, limitations, and risks). BRCA1 test results were offered after an education and counseling session in a research setting. Outcome variables (including depression, functional health status, and prophylactic surgery plans [follow-up only]) were assessed at baseline and 1-month follow- up interviews. Participants. - Adult male and female members (n=279) of families with BRCA1-linked hereditary breast-ovarian cancer (HBOC). Results. - Of subjects who completed a baseline interview (n=192), 60% requested BRCA1 test results (43% of all study subjects requested results). Requests for results were more frequent for persons with health insurance (odds ratio [OR], 3.74; 95% confidence interval [CI], 2.06-6.80); more first-degree relatives affected with breast cancer (OR, 1.59; 95% CI, 1.16-2.16); more knowledge about BRCA1 testing (OR, 1.85; 95% CI, 1.36-2.50); and indicating that test benefits are important (OR, 1.45; 95% CI, 1.13-1.86). At follow- up, noncarriers of BRCA1 mutations showed statistically significant reductions in depressive symptoms and functional impairment compared with carriers and nontested individuals. Individuals identified as mutation carriers did not exhibit increases in depression and functional impairment. Among unaffected women with no prior prophylactic surgery, 17% of carriers (2/12) intended to have mastectomies and 33% (4/12) to have oophorectomies. Conclusions. - Only a subset of HBOC family members are likely to request BRCA1 testing when available. Rates of test use may be higher in persons of a higher socioeconomic status and those with more relatives affected with breast cancer. For some high-risk individuals who receive test results in a research setting that includes counseling, there may be psychological benefits. More research is needed to assess the generalizability of these results and evaluate the long-term consequences of BRCA1 testing.

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